ST. GEORGE — Sharing his story of life with Lou Gehrig’s disease, St. George resident Ben Thomas, 32, will be featured tonight on the 48th annual national broadcast of the Muscular Dystrophy Association’s Labor Day weekend “Show of Strength” Telethon. His appearance will air at 8 p.m. MDT/CDT, 9 p.m. EST/PST on ABC television across the country, specifically in Utah on ABC channel 4.
With support from his wife, Jena, and 3-year-old daughter, Emmerson, the Thomas family will share their “story of strength” in a videotaped profile during the two-hour broadcast this evening.
Ben Thomas and Jena Thomas have been married for nine years. He was diagnosed with amyotrophic lateral sclerosis, or ALS and also known as Lou Gehrig’s disease, three years ago, shortly after he noticed his leg give out during a church basketball game. Emmerson, their now 3-year-old daughter was just 4 months old at the time.
While he said he had never been asked what legacy he’d like to leave, “the legacy for my daughter is I want her to know me,” Ben Thomas said. “I don’t want her to have to ask what dad was like.”
ALS attacks the nerve cells that control muscles, ultimately resulting in paralysis of all voluntary muscles, including those used for breathing. Average life expectancy is three to five years after diagnosis.
Ben Thomas has been writing a series of letters to leave behind for his daughter. “We’re planners,” Jena Thomas said of the devastating road and decisions ahead.
While ALS has stolen his ability to walk and has made it harder for him to speak, he is determined to share his powerful message about love, family and hope for a cure for ALS.
Ben Thomas sees several doctors at the University of Utah Medical Center, the site of the MDA/ALS center in Utah, and spends many hours packing all doctors into one visit. He sees a neurologist, an occupational therapist, speech therapist, respiratory therapist, pharmacist, and a nurse. The family also has a social worker, who helps them with paperwork related to Ben Thomas’s health and illness such as switching over to disability when he was no longer able to work.
At this stage of his disease, Ben Thomas is fed through a tube with Isosource, and he just received DynaVox, a computer system that will help speak for him when he can no longer speak.
“I wish there were more treatments for ALS,” Ben Thomas said. “The MDA provides a lot of care.” In fact, the Muscular Dystrophy Association covers whatever the Thomases’ insurance doesn’t pay and loans out the equipment that Ben Thomas uses.
“With ALS ,what he needs changes so quickly,” Jena Thomas said. “We started with a shower bench, and rather than having to buy that and then get something different in a few months we can borrow that and give it back.”
Ben Thomas is using a Hoyer lift, shower chair, hospital bed, and the electric chair he uses is covered for repairs.
“We’ve bought things we no longer use so we donate as well,” Jena Thomas said. “The MDA makes all of that possible.”
The Thomas family has spent the past few years between both their parents’ homes and has felt comfort and support from their family, church and community. In order to bring those loved ones that live further closer to them Jena Thomas created a public blog which details their everyday lives which, she said, “feels like the new normal.”
“MDA is honored to introduce Ben Thomas to the American public,” MDA President and CEO Steven Derks said. “The Thomas family epitomizes the true meaning of ‘strength,’ as they have graciously and bravely agreed to share their compelling story. Our deepest thanks go to them for helping convey the urgent, humanitarian nature of our mission.”
The Thomas family is one of six MDA families who will tell their stories of survival and hope during the Show of Strength MDA broadcast. This year’s telethon will deliver one-of-a-kind show performances, powerful “stories of strength” and moving calls-to-action to help families affected by muscle diseases.
MDA Show of Strength Telethon
The 2013 telethon will feature a star-studded celebrity lineup including: Ryan Seacrest; Backstreet Boys; country stars Luke Bryan, Darius Rucker and Lee Ann Womack; “Glee” star Matthew Morrison; Enrique Iglesias; Paula Abdul; teenage pop sensation Austin Mahone; hip-hop dance crew Jabbawockeez; “American Idol” runner-up Jessica Sanchez; Kenny Loggins with the Blue Sky Riders; American blues rock band Vintage Trouble; and Universal recording artist and star from “The Voice” Chris Mann.
Additional presenters for the 2013 show include: ABC’s Dr. Richard Besser; “Dancing with the Stars” contestant and “Brady Bunch” mom Florence Henderson; Emmy award-winning journalist Jann Carl; Olympic gold medal gymnasts Nadia Comaneci and Bart Conner; and No Doubt drummer Adrian Young and his son Mason Young.
The entertainment event will raise funds and awareness to support the MDA’s mission to help children and adults affected by progressive and often fatal muscle diseases.
The Muscular Dystrophy Association is the world’s leading nonprofit health agency dedicated to finding treatments and cures for muscular dystrophy, amyotrophic lateral sclerosis and other neuromuscular diseases. It does so by funding worldwide research; by providing comprehensive health care services and support to MDA families nationwide; and by rallying communities to fight back through advocacy, fundraising and local engagement.
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